Hi all,
I don't even know where to begin, but wanted to fill you in on what is going on in our world right now. As some of you may know, Aiden has been a bit delayed in his speech. We hadn't been too worried. We took him to Early Intervention Services back in November to have him assessed to see if he qualifies for Speech Therapy. He did incredibly well on that assessment which included a hearing and eye test, and LONG cognitive test. He passed all with flying colors, but his speech did show some signs of delay, so they asked to see him back around his 4th birthday (Feb 4th) to assess where he is at. This assessment is scheduled for Feb. 10th. After that initial assessment, his speech actually improved and we thought we were moving in the right direction and all would be fine. He started doing GREAT in school, and other areas.
However, about a week or so ago, Aiden went to bed his usual self. Talking up a storm. Working on his speech to the point where if he wasn't happy with how it sounded, he would stop, go back and try again. All was well. The next morning Aiden woke up and was "different". He wasn't talking. He was squinting his eyes repeatedly. He seemed VERY "off". We thought at first that it was probably a phase, as Aiden has had lots of phases that he has gotten past and moved on from. But... after a few days of no talking, and weird behavior, we took him to the doctor. The doctor examined him thoroughly. On the outside physically Aiden appears to look fine. He is also playing like normal and is as friendly as ever, but his signs of language regression and ticks (the blinking of the eyes and constant clearing of the throat) is very alarming. We have been put on the fast track to test him and see what is going on. They are testing for any trauma to the head/brain, and also brainwaves to see if he is having seizures, along with blood tests. Tomorrow Aiden will have his EEG. This entails us having to only allow him to 5 or less hours of sleep tonight (so we are putting him to bed around 2pm, and waking him before 7pm).
Aiden has improved in some areas since his initial wake up on that very bad day. Cognitively he still has all his information, thank goodness. For example, if we show him a number and ask him what is is, he can answer as clear as day! If we lay out a pile of letters, and ask him where a "W" is, he picks it up and says the letter CLEARLY! But.. if you try to have a conversation with him - no dice. He will not answer. He sometimes will try, and all that comes out is babble, followed by STRONG frustration. It's like a 2 year old who has his thoughts but can't get them out clearly and in turn tantrums. Thankfully we can still reason with him, so if we talk to him, we can easily calm him down since he understands as a 4 year old would. He just can't verbally express himself right now. He used to be great at greetings and salutations. Now he doesn't say hello or goodbye, doesn't use name recognition and just usually won't respond. Not our Aiden at all. As you can probably imagine, Will and I are quite distraught about all of this. I'm having a very hard time right now and just trying to stay as positive as I can but finding myself falling pretty depressed.
Soon Aiden will have an MRI of the brain (not sure exactly when that is yet), and will have to be sedated for that. Our consultation with the pediatric neurologist is on January 27th where we hope to find some answers. This is a doctor that has been repeatedly recommomended by many people I know who have children with seizures. He is apparently the best in the area. Only the best for our little guy.
We are finding that Aiden does best in his home environment right now. We can quietly work with him, and play and he seems calm and therefore less frustrated and not a lot of ticks. We do find the more stimuli the more aggravated he becomes right now. Having said that, we took the kids to Disney yesterday, and as usual it was a very nice day with our two amazing children. So... aside from the language/communication issues, Aiden is doing okay in public situations. We are trying to be as honest with Anna as we can, without scaring her too badly. Of course, she is quite tuned in to what is going on, and notices the changes in her little brother.
I'm sending this to my friends that are in my inbox, and any family that is also in my inbox. If you see I've missed someone, or there are other family members who would like to know what is going on, please feel free to forward.
We will keep you updated as we get information.
Love, Holly (and Will, and Anna)
